The New York Times Tackles Teens and Cancer

Reader note: I’ve started using my name, ’s.e. smith,’ rather than my pseudonym, ‘meloukhia,’ to identify myself on FWD. I apologise in advance if that causes any confusion! I’m sticking this notice on my posts for a few days to make sure that everyone sees it.

“In Cancer Fight, Teens Don’t Fit In,” the headline proclaims. This New York Times article delves into the gaps in cancer treatment for teens in the United States. Teens with cancer tend to be diagnosed later, and can experience radically different treatment outcomes depending on who treats them and where.

Teens forever seem to be stuck in an inbetween place. They are deprived of rights and bodily autonomy until they reach the age of 18. They can be compelled to accept treatments they do not want. They are assumed to be without value by many people in society and their beliefs are discarded and devalued. This is especially evident in medical treatment for teens, who are often treated as though they lack decisionmaking capacity, don’t understand medical information, and can’t be depended upon.

Simone Weinstein, interviewed for the article, talked about how when she first started experiencing symptoms, it was written off. ‘She [her mother] thought I was being a normal, somewhat lazy, silly teenager.’ It turned out that she had acute lymphoblastic leukemia.

Heather Bongiolatti talked about wanting a support group and not fitting in with the pediatric or adult groups: ‘Most of the adults were parents of children with cancer. And the groups for kids were doing drawing and making crafts. I was 15, I didn’t want to do that.’

One thing which I liked about this article is that it actually centred some teen voices, rather than talking about teens, as the media so often seems to do. The Times took the audacious step of thinking that perhaps, if it was writing an article about cancer among teens, it should interview some teens to get their perspective. Of course, a number of adults were interviewed as well, but just seeing the voices of teens at all in this kind of reporting is a big step forward.

Teens aren’t just ignored by the media. Clinical trials focus on adults with cancer or children with cancer, but not teens, who turn out to be a rather unique group. Teens with cancer are less likely to be involved in clinical trials, and surprisingly little is known about some cancers which are primarily seen among teens. For some teens, being trapped in the inbetween place has fatal consequences.

This article is about cancer, something which some people identify as a disability and others do not, but I think it has wider implications for teens in general and disabled teens in particular. That attitude that teens are ‘lazy,’ for example, is used to penalize people who are forced to take partial course loads or to drop out of school because of disability. It’s also paired with the idea that teens can’t be disabled, because they’re ‘too young,’ and that insistent thrusting of teens into the ‘don’t know what’s good for you’ box means that teens are often treated incredibly patronizingly. Disabled teens, for example, may not be provided with access to sexual education.

This particular aspect of the intersection between age and disability is one which is often ignored. This is something we need to remedy, and in order to deconstruct it, we also need to talk about the routine devaluation of teens and their voices. Why should my words be weighted more heavily because there’s not a ‘teen’ in my age? And, a point especially relevant to Internet conversations, why should our valuations of people abruptly shift when we find out that they are teenagers?

About s.e. smith

s.e. smith is a recalcitrant, grumpy person with disabilities who enjoys riling people up, talking about language, tearing apart poor science reporting, and chasing cats around the house with squeaky mice in hand. Ou personal website can be found at this ain't livin'.
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5 thoughts on “The New York Times Tackles Teens and Cancer”

“Simone Weinstein, interviewed for the article, talked about how when she first started experiencing symptoms, it was written off. ‘She [her mother] thought I was being a normal, somewhat lazy, silly teenager.’” I know that feeling. I started developing hashimotos symptoms at 12 and severe symptoms at 14 and got a lot of ‘lazy/hysterical teenager’ dismissals. The fact that my PCOS caused mood swings didn’t help my cause either.

Great post. Teenagedom is already an odd place to be, but dismissing symptoms and calls for help makes everything worse. I recognized behavior that eventually became known to me as social anxiety when I was about 11 (I’m 15 at the moment), but it was dismissed as “normal awkwardness and fear” for quite a long time. Jeez, do I hate those assumptions. “Your a teenager, intense mood swings are normal!” or the painfully over used “It’ll be better when your older!!”. I’ve also, unfortunately, not been able to pick my own speech language pathologist, tying into the whole “You can’t make decisions for yourself!!” theme.

Mom’s a former EMT (Navy) and she took my pulse a lot before the official thyroid diagnosis in ’01 (a couple months after I turned 13, making me an official teenager).

It was scarily high, so one day we went to the local firehouse and asked one of the firemen (or an EMT or a combo of both, I don’t know) if he could check my pulse. It was scarily high.

“Ma’am, your daughter may be on drugs.” “I’m not.” “Teenagers lie.”

Thankfully, thyroid problems are relatively easy to spot (blood tests) and my doctors were very receptive, as was my mom, because (I don’t remember this, I mean I remember the headaches, but not telling her about them) I never complained about my pain until I got bad headaches. One trip to the neurologist later, I was on Pamalor, with heart palpitations. Went off that, heart beat still too high (108 while half-asleep), heart doctor, battery of tests, including blood, ta-da thyroid diagnosis. Pretty fast and only a couple missteps.

It’s been harder as I’ve gotten older and my problems have been harder to prove. At the psych ward (4 months from 18), I was told that 17-year-olds don’t have that kind of pain, and I shouldn’t be seeing a gyno, blah blah blah you’re a kid. (Luckily, the minor ward was divided, so I spent it with teenagers/adolescents. The other side had little kids.) So what did the doctor put me on? Cymbalta, meant for adults. Head, meet desk.

The worst is I don’t feel grown-up, and having the problems as I became a legal US citizen was confusing and hard. I had a kidney stone procedure a week before my 18th birthday, and was spoiled rotten in a mostly empty kid ward. 2 weeks later, in a different hospital. In the adult section. And mucho confusion about paperwork – can she sign this? Should her mom? On and on.

University Student doesn’t quite equal ‘teenager’ (though, in the UK benefits system, they don’t exist at all – up to 16 is child, over 25 is adult, wtf?) but at 19 I had the following conversation with a doctor:

Me: I’ve got a lump in my boob. Should it, like, get checked out or something?
Doc: It’s probably nothing. You’re too young for it to be anything bad. *change subject*

The lump has been there since I was 14 and hasn’t changed since, but he didn’t even let that into the conversation before it was dismissed. *grr*